Leo's Pride gathers for 4th annual Go Leo Go! event

Leo's Pride gathers for 4th annual Go Leo Go! event

LEXINGTON COUNTY, SC (WIS) - Four-year-old Leo Bugenske of Chapin loves going for a run with his mother.

And his Spinal Muscular Atrophy doesn't stop him.

"When we ask him what he wants to do, he wants to go for a run and then he tells us he wants to go to the park, which is Saluda Shoals Park," says Leo's dad, Adam.

So Saluda Shoals Park is the best place for Leo's family to host the Go Leo Go event.

"We've been coming here since he was tiny and he loves that there's just miles and miles of accessible trails so we could easily wheel him on his wheelchair, and you know, down by the river and it would stay cool when it was so hot," says Meredith Bugenske, Leo's mother.

"With Leo, it's a matter of 'Hey, where do you want to go?' and the first place that comes to mind is the place where he feels welcome, where there aren't any boundaries for him."

The mission of the event is that everyone can participate.

"Everybody has a great time," says Meredith. "It's perfect because it's a great place for everyone to be able to come.  It's accessible so even strollers, chairs, everyone can come out and participate.

Leo was diagnosed with SMA when he was two weeks old. His mother says the genetic disease is often referred to as ALS in babies. It's a progressive neuromuscular disease and his muscles will get more and more weak over time.

"It's a difficult diagnosis," she says. "It's the number one genetic cause of infant death. It's not something that's easy to stomach. And we made the decision early on, you know, we weren't going to dwell on the what ifs.  We were going to live life to the fullest and he is always game for anything."

Currently Leo is in preschool.

"He uses a computer for communication," she says. "It's an eye gaze system, so he uses his eyes, kind of like how we would use a mouse to communicate, to make selections. He can play games, he can pull up Netflix.. . We try to help be his voice and try to do what we feel is inside of him."

In addition to funding research for SMA, money raised from the event goes to help families of other kids who face physical limitations.

"What we also like to do in this Love Every One mindset, that Leo's inspired with us, just just to find families like us that have some needs. And maybe it's medical transportation that they can't afford or it's medical equipment that insurance might not be picking up and what we're able to do with the support of the community and everybody coming together is find these families and really fill that need for them," says Adam.

Leo's mother brings him along when she runs competitively in events throughout the Midlands. Dad is always waiting at the finish line.

"What's a lot of fun for me, is when individuals cross the finish line and I can hear them talking about, 'Hey did you see that kid out there?' or when he comes across the finish line, there are a lot of athletes, a lot of runners that cheer them on and come up to Meredith and Leo and say. 'That was great seeing you out there," Adam says.

"We love hearing the cheers for him," she says. "People love seeing him out there running and love to make comments, 'Y'all are awesome,' and I always say it's not me, it's him. It's always been him. I'm just there kind of helping. He's the one that's so incredible and so motivating."

The Run is October 28 at Saluda Shoals Park on St. Andrews Road trail. Everyone of all abilities is welcome, to participate, cheer or just have fun. Halloween costumes are encouraged. Click here for more information on Leo's Pride. Registration is at 7:30, the 5K starts at 8:30 followed the family walk and Lion Heart Dash.

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